Olivia Gaines was being treated in the pediatric unit one night because the adult unit was full. “I remember being in pain and I was up at 2 or 3 am and I heard a kid crying. Why was this kid with cancer crying? I didn’t want to think about it.” Discreetly, she began walking down the hall towards the cries, averting nurses as they roamed the unit. When she reached the kid’s room, she opened Spotify on her phone and serendipitously, the song “Dancing in the Moonlight” played. And in the dead of night, in her backless hospital gown, she “started dancing in the moonlight with this kid and he stopped crying.” She wondered “how many more kids are crying right now and just need a little song?”
Olivia Gaines is an iconoclast, in every sense of the word. Upon her high school graduation, she donned a Gap sweatshirt and announced to the Ivy-league bound graduating class that she would be taking a gap year. She co-led a backpacking crew on an 18 day outdoor trip through the Adirondack Mountains. She studied art history in Italy and got accredited in dog sled management in Canada. She became fluent in Spanish in three months, worked as a housekeeper in Hawaii, and ran a half marathon. She helped to start the TEDx conference series at her college and is passionate about “breaking the mold to break expectations.” When recounting her diverse life experiences, she says “I wish I could get this in ten seconds.” Nearly impossible, with regards to all that she accomplished within the first 20 years of her life and considering what happened next.
Olivia’s symptoms began when she was leading a backpacking trip. “It started slowly, at first. I was beating myself up because I started to be behind everybody, and everyone would keep walking…I was so tired.” Quickly following the trip, she experienced debilitating pain in her neck that hindered movement to the point that it was difficult to open a book at college. In the school cafeteria “I couldn’t use a fork to feed myself and all these people just walked by… and I wondered ‘Would I be that kind of person to walk by if I saw someone in this kind of pain?’ People just didn’t know how to deal with it. No one really did. And there was one person who would cut my food and feed me, and I thought I couldn’t do this for the whole semester.” Olivia ended up discontinuing college during her sophomore year, dedicating her time towards investigating her declining health through consultation with several medical professionals, ranging from general practitioners, to an upper cervical specialist, to ER doctors, to neurologists, chiropractors, and university health center physicians. The Rx was always the same: rest, take pain meds, and come back in two weeks.
Following a bout of significant abnormal bleeding, Olivia’s mother urged her to go to urgent care. Within 24 hours Olivia was diagnosed with Acute Myeloid Leukemia and began chemotherapy. “It took me almost dying to be diagnosed. I remember wondering ‘Who am I going to be?’ This was a defining moment in my life. I was concerned about who I would turn into. Maybe I’m resilient, but what if I gave up on living?”
Following a year and a half of relentless treatments where Olivia was often in the hospital for periods of three and a half months, she remembers “I lost a sense of imagination and being able to have a vision. And when you lose vision, you perish. So it was a lot of staying in the bed and wondering why I was still here. I did not have belief that things would change. That was a hard place because that’s what I feared when I first got the diagnosis. And I thought, ‘Well, I got this far, now I am ready to go.’” She remembers being fatigued to the point that when she would walk to the bathroom, the physical exertion would tire her. She would nap, and then wake up and realize that a day passed. She felt all “senses of power being taken away. Life was interrupted at a stage when I was growing into the person I wanted to be. And all the sudden, I felt like I wouldn’t have time to become the person I wanted to be, so why even try?”
Though unique in its own right, Olivia’s story is representational of the cancer experience of young adults. This story, one of the 70,000 stories of young adults diagnosed with cancer yearly in the U.S. alone, reminds us of a growing need to develop supportive care practices in medical and psychosocial communities that attend to the unique needs of young adults facing cancer. She identified many issues that, though not entirely exclusive to the young adult population, are certainly preeminent or exacerbated in this life stage due to a cancer diagnosis. To name a few:
1. Access issues. Olivia was only made aware of young adult support services in her treating hospital nearly a year after her treatment began. There is already a scarcity of resources for young adult cancer patients, and even then, those resources are not necessarily accessible or known to young adults.
2. Gaining job skills and learning about worker’s rights after cancer. Olivia felt that she went from “a young professional to professionally sick.” The job market is already competitive, and due to her youth, lack of job skills and experience, and education cut short, it is even more difficult to navigate the working world.
3. Issues with triaging and assessing needs. When being triaged for care, Olivia often felt that providers relied on superficial clues (i.e. she was young, ambulant, and looked fairly healthy) that she worried would preclude her from receiving the care she truly needed. She was compelled to bring her mom with her to every appointment because she felt she received better care when her mom was there to advocate for her.
4. Information and support with dating and fertility. Already a taboo topic, dating and fertility are pressing concerns for young adults facing cancer. Olivia had and continues to have several questions surrounding early menopause and fertility that she feels were not adequately addressed while she was in treatment.
5. Forum to connect with other young adult cancer patients. Olivia knew that there are young adults who have cancer, but she found it incredibly hard to find and connect with them. Though the young adult cancer patient population is relatively small in the world of cancer, it still exists, and it can be incredibly beneficial to connect with others who share a piece of your circumstances.
6. Supportive care following treatment. Many support services are only available while you are in the midst of treatment, and there tends to be a dearth of support for the period of time directly following treatment. In Olivia’s case, that period was one of the darkest stages of her recovery. More patient information about long term treatment side effects, health risks, and emotional support is needed.
Research validates Olivia’s experience, citing issues such as isolation, continuity of care, grappling with mortality, body image issues, decreased independence and reliance on caregivers, worries about the future, finances, and disruption of work or higher education as critical areas of concern for young adults. Further, there is a gap in the research addressing young adults as most oncology literature surrounds adult populations. Often, young adults are grouped with pediatric or adult groups in treatment and research, which further obscures our understanding of the needs of this population.
Olivia fortunately had the support of an around the clock caregiver (her mom cared and advocated for her all the while holding down a full time job), financial stability and insurance to pursue effective treatments, and an inherent resourcefulness that enabled her to find supportive venues, like Cancer Support Community. Olivia also had the support of her church, college, and high school alma mater through the blood drives that they conducted, which also raised awareness for national bone marrow associations. She remembers slowly coming out of the fog she experienced during her recovery by recognizing “little steps, small decisions, even if it was just one day being grateful for something.” A nurse gave her CSC’s calendar and, though she was reluctant to come at first, she quickly became grateful that she simply had a place to go. After participating in CSC’s services, her potential became tangible opportunities. She landed a part time job with the gym that offers a strength training class at CSC. After receiving an email about a writing competition, she submitted a letter to young cancer patients and won $5,000. She entered a step study she was introduced to at CSC and increased her steps from 1,000 to 7,000 – 8,000 steps a day in six short weeks. She reignited her passion for writing by attending a weekly journaling and poetry class (read Olivia’s blog here). What ultimately shifted for her? “There was the support group… there were the phone calls…receiving messages of impact when I wasn’t expecting it… having a space away from the hospital that gets it… those little moments of remembering who I was.” When reflecting on her experience at CSC, she says “So many people are traveling on the surface where you cannot afford to do that here. These places are created to restore the sacred. You help give everyone peace when there’s a place taking care of you on a soul level. That’s what’s going to help you come alive again. That’s why it’s beautiful that this place exists.”
Though Olivia’s story has an encouraging ending, she humbly recognizes that other young adults with cancer may not have access to some of the resources that she did. More investment in addressing issues such as accurately assessing for needs (both medical and psychological), linking patients to resources, and attending to the unique emotional concerns of young adults is essential in providing comprehensive cancer care. To that end, CSC will be offering a new young adult support group starting in April 2018 to provide a place for young adults facing cancer to connect, reflect on treatment, recovery, and survivorship, and gain hope. To those who are just at the beginning stages of getting a cancer diagnosis, Olivia eloquently says “You can be more than be sick. You’re here. You’re worthy. Keep the vision of who you want to be alive.”
To find resources for young adults facing cancer, call Cancer Support Community’s helpline at (888) 793-9355 or follow this link.